For Parents

For Parents

The Fear of the Unknown

A common source of anxiety in young people with ASD

 

Intolerance to Uncertainty

Intolerance to uncertainty (IU) is the tendency we have to react negatively to uncertain situations and events. It is fear of the future. This is something that we all experience to some degree. It is perfectly normal to have some worries about what the future will hold. We want to be prepared for an upcoming interview, know what kind of atmosphere to expect at the next party we attend, and be ready for our holiday trip to see family.

 

However, when this intolerance of uncertainty becomes excessive, it can have a negative impact on everyday life. Increased levels of IU can cause heightened stress, unnecessary behaviors (like endless list-making and constant reassurance-seeking), avoidance of new experiences, and significant anxiety. The emotional, mental, behavioral, and physical effects of intolerance of uncertainty can negatively impact an individual’s development and experiences.

 

IU and ASD

Anxiety and intolerance to uncertainty are linked, and it has been shown that children with ASD have increased levels of both. This intolerance can become so significant that a child’s activities are restricted, negative behaviors are increased, and emotions are distressed. Anxiety and IU are also linked to a child’s insistence on sameness, need for routine, and repetitive behaviors. IU explains why some children with ASD so strongly want to avoid unexpected events and make life as predictable as possible.

 

Research

Recent research has set out to develop a training program for parents to teach them how to best address their child’s IU. The program teaches how to recognize IU, identify triggers for IU, and develop strategies for decreasing uncertainty in children. Jacqui Rodgers and her colleagues from the Institute of Neuroscience at Newcastle University have found that it is more productive to increase a child’s tolerance for uncertainty rather than to alter their environment by removing the uncertainty. Instead of taking away the fear of the future, parents can make their children more comfortable with that fear by encouraging flexibility through gradual exposure, open discussion of IU, and reflection.

 

What You Can Do

 

Notes from https://www.anxietybc.com/sites/default/files/ToleratingUncertainty.pdf

How to spot behaviors of excessive IU:

  • Seeking excessive reassurance from others
  • List-making
  • Double checking
  • Refusing to delegate tasks to others
  • Procrastination/avoidance
  • Distraction

 

How to increase tolerance:

  • Make a list of things that cause anxiety/behaviors that you do to reduce anxiety
  • Start picking small items that you can do to practice tolerating uncertainty
  • Reflect
    • How did that feel?
    • Did things turn out okay even though you were uncertain?
    • If they didn’t, what happened?
    • What did you do to cope with the negative outcome?
    • Were you able to handle the negative outcome?
    • What does this tell you about your ability to cope with negative outcomes in the future?
  • Gradually try more difficult things

 

Reference:

Rodgers, J., Hodgson, A., Shields, K., Wright, C., Honey, E., & Freeston, M. (2016). Towards a Treatment for Intolerance of Uncertainty in Young People with Autism Spectrum Disorder: Development of the Coping with Uncertainty in Everyday Situations (CUES©) Programme. Journal of Autism and Developmental Disorders. doi:10.1007/s10803-016-2924-0